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CHfather

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CHfather last won the day on February 22

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  1. wish i could help, but just not expert. you could try typing [truffles] into the search bar at the top of the page. i know there's been a lot of discussion here about strains and quantities. wishing you the best -- you're a good one!
  2. If you do have hemicrania continua, there's a good chance the doc won't have a clue about it. I'd urge you to bring something with you about it. The very good news is that if it is HC, indomethacin will treat it; the not-so-good news is that indo is tough on the tummy, and you'll probably need to take another pill, along the lines of nexium, to protect yourself. All the doc needs for the "diagnosis" is to see whether the indo works or not. BTW, back to what filacibin said and your response, it's my understanding that you can still have migraine without the sensitivities you mention. However, it does seem for now at least like HC might be a good hypothesis because of the constant pain you experience. Again, though, if it's migraine, meds will help (verapamil and sumatriptans), and so will busting (see the numbered files in the ClusterBuster Files section).
  3. Sounds enough like CH that you ought to get it treated properly. The BP medicine is probably verapamil. Low dose is kind of required at first, to make sure it doesn't affect you negatively (docs should be following up on that), but a very substantial dose is usually required to have any effect during a cycle. It's not uncommon for people to be put on a course of steroids while waiting for the verapamil to get to high enough doses to help. For many people, steroids stop the pain while they're on them but the pain comes back afterward. You should have OXYGEN -- the #1 abortive!!! And the pill (sumatriptan?) almost certainly won't help. Sumatriptan nasal spray works for a lot of people, and sumatriptan injections work for almost everyone. That's pharma stuff. (There's more, but those are the basics.) The pharmas are not without side effects, except O2. You should read the file in the ClusterBuster Files section about the vitamin D3 regimen. It's helped lots and lots of people. And give some thought at least to busting, which is covered in the numbered files in the ClusterBuster Files section. If you go to the clusterbusters.org home page (https://clusterbusters.org/) and click on the "Cluster Headache" tab at the top of the page, you'll be able to read a file about oxygen, see thorough information about treatment, and maybe locate a knowledgeable doctor. Try quickly drinking a cold energy shot, such as 5-Hour Energy, at the first sign of an attack. Get back to us -- let us know what's happening!
  4. I guess I would suggest that amount of pain is a diagnostic criterion, but that you ought to treat it as CH (or perhaps as hemicrania continua -- see below) and see what happens. You don't describe the nature of your attacks. Do you have head pain all day every day, or do you get some number of attacks each day? If the latter, how long do they typically last? Are you able to sit or lay still during them, or do you need to pace or at least rock back and forth? Do you think the Aleve or iboprofen, or whatever you are taking now, actually helps them? What are you using now? Surely someone must have diagnosed/misdiagnosed them as migraine and given you something, such as Imitrex? If you have distinct attacks that last some number of minutes of hours, can you get oxygen to try? Oxygen is effective for a very large percentage of people with CH, but not effective for most people with most other headache conditions. Have you ever taken indomethacin? That works to treat a CH "lookalike" condition, hemicrania continua (HC), but it doesn't work (hardly ever) for CH. Also, HC pain is generally less severe than CH pain, with occasional episodes where the pain worsens. Sounds like this is a possibility for you, and it is easily diagnosed through your response to indomethacin. Here's a link to some HC information: https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/
  5. Interesting that they're still using cocaine. That was the original substance used, but for quite a while it's been primarily lidocaine. Would very strongly urge your son to start now on the vitamin D3 regimen that has helped hundreds of people with CH. You can read about it in the ClusterBuster Files section of this board.
  6. Maybe there will be an answer here to this question. I am nearly certain that there is a Portland-area group. You might try asking at the Facebook page of the group "Cluster Headaches." It's a membership group so you might have to wait a while before being accepted (I don't know what "a while" is). Your best bet might be to directly PM 1961mom, a member here who lives in the Portland area: https://clusterbusters.org/forums/user/17179-1961mom
  7. Excellent advice from urs and amon. As they say, OXYGEN, OXYGEN, OXYGEN. I think urs meant to say "up to 1000mg/day" regarding the verapamil (or maybe he meant up to 1 gram) I assume the metoclopramide that your doctor prescribed is to protect your gut from the naproxen. Since the naproxen won't help anyway, I think you might consider dropping those two, unless the metoclopramide is for some other condition. What form is the sumatriptan in -- pill; nasal spray; injection? You could try melatonin at night, starting at about 9 mg and working up if necessary to find an effective and acceptable dosage. You could try an energy shot, such as 5-Hour Energy, at the first sign of an attack. That works for many people to reduce or even abort an attack. Several people have found that putting their feet in a bathtub with water that's as hot as they can stand will make an attack more tolerable. Busting could well be the best thing for you, as it has been for so many, but unless you can get your hands on a busting substance right away and you've been off the sumatriptan for 5 days, you need something to get you by. That something is primarily OXYGEN.
  8. You did it.
  9. The D3 regimen is described in the ClusterBuster Files section in some detail. I see that the switch to the new board has messed up some of the formatting, but I think it's still readable. Here are the ingredients (hope the formatting holds when I post it). If you are taking verapamil, take it 6-8 hours apart from when you take the calcium supplements. Read more here: http://www.vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people Supplement Dose Vitamin D3 (Cholecalciferol) 10,000 IU/day (Adjust as needed to keep serum 25(OH)D near 80 ng/mL) Omega 3 Fish Oil 1000 to 2400 mg/day (Minimum of EPA 360 mg/day, DHA 240 mg/day) Calcium * 220 to 500 mg/day Magnesium 400 - 800 mg/day (magnesium chloride, glycinate or oxide) Vitamin K2 (MK-4 & MK-7) MK-4 1000 mcg/day, MK-7 200 mcg/day (MK-7 preferred due to half-life) Vitamin A (Retinol) * 900 mcg (3,000 IU) for men, 700 mcg (2,333 IU) for women (Maximum Dose) Vitamin B 50 3 month course, after that, the 7 B vitamins in the Mature Multi will be sufficient Zinc * 10 mg/day Boron * 1 mg/day minimum, 3 mg/day optimum Regarding detox, you can read about it, with some inaccuracies, at the file called "Playing Well Together" in the ClusterBuster Files section. Because there are some inaccuracies there, I would suggest that you post your questions in the "Share Your Busting Stories" section of the board. Many people can help you if you describe all meds you are now taking. In essence, you want to be off most pharma meds, particularly sumatriptans, for five days. Verapamil at lower levels doesn't seem to block busting. About other things, such as steroids or topirimate, I think there are still open questions.
  10. Sorry you are taking all that stuff. The side effects must be unpleasant. (It's my very vague understanding that sometimes lamotrigine increases the side effects of divalproex.) It's good to ask your neurologist about the full D3 regimen. If there is a specific interaction with your current meds that he is concerned about, that is important to know; if he freaks out about the large amounts of d3 just in general, as some doctors do, I think you'll have to make the decision on your own. As far as I know, no one has had bad effects from that much D3, as long as (1) they are taking the full regimen, and (2) they have blood tests to make sure that their D levels don't eventually get too high. You'd want to take the calcium part of the D3 regimen 6-8 hours apart from verapamil (because verap is a calcium channel blocker). You will probably have to order the mask separately. If your doctor is highly sympathetic and if it's possible in Canada, you might try asking for a demand valve system for your O2. If you want to order a mask now, it's at http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit We just had a report from a person having very good results with another approach to using oxygen. If you type the phrase "red neck" (in quotes) into the search bar at the top of the page you will see posts about that method, which doesn't require any fancy equipment. We have found that it's not necessary to be completely off of verapamil in order for busting to be effective, but I don't think anyone knows what applies at 960 mg/day. Sounds like your doctor is really trying to help you and more or less knows what he's doing (as much as anyone does when treating CH). If you think busting might be something you want to try, I guess you'd have to look at all the meds you're taking, and I'm lost there. I can say that for some people, having a good O2 system, having the D3 regimen kick in, and using energy shots makes it easier to get off the necessary meds enough to try busting. (And it's also not completely unusual that when people stop the triptans, their headaches become less bad, probably because of the rebound effects you have mentioned.)
  11. Many people who come here really desperate find that "busting" (taking psychedelic substances, sometimes in doses small enough that they do not cause a "trip") is the answer to their prayers. You can read about busting in the numbered files in the "ClusterBuster Files" section. What might be the hard part for you is that you should stop taking triptans for five days before busting. We can discuss this more if you decide that you want to try busting. "Truffles" from the Netherlands have proven to be quite effective for busting. Busting has helped many people with migraines, too. Meanwhile . . . Do you have a preventive medication? Usually that's a calcium channel blocker called verapamil in the US -- and usually it has to be taken at higher levels than many doctors prescribe in order for it to be effective. Have you tried quickly drinking an energy shot such as 5-Hour Energy at the first sign of an attack? If you are able to get melatonin (it's available openly here, but I think only by prescription in Europe), 9 mg at night, or more, can be very helpful. Magnesium can help (that is mentioned in Bob's paper; I'm not sure of the dosage). Some people find that if they stay on the oxygen after an attack has been stopped, for about 10 minutes, it can hold off future attacks. Oxygen when used in conventional ways is most effective if the flow rate is at least 15 liters per minutes, and if you have a mask that is made for people with CH. You probably didn't have either of those things the last time you tried it. There is also another method for using oxygen that we can tell you about if you get that prescription. Finally, I would suggest that you look at the list of "triggers" in the ClusterBuster Files section. It is possible that you might notice something there that is making your situation worse.
  12. I read elsewhere that you were at Headache on the Hill this week. Thank you! And thanks to any others from this site (Bob, of course, as always) who also made the journey.
  13. :-) I wonder how many people here have actually tried Batch's method. I think you are the first to report on having done it. Thrilled that it worked so well (plus the energy shot).
  14. OXYGEN!!!! It's not even a question. You must have it. The vitamin D3 regimen described in the ClusterBuster Files section has helped hundreds of people.
  15. I can tell you with 99% certainty that your blood test will show that you are far below the D level that is required to affect CH. With 81.3% certainty, I can say that you're below even the medical standard level for D. It would be wrong for me to advise you to start the "loading" process that Batch describes, but I guess I can suggest that you seriously consider doing that. If you can't get that blood test soon from your gp, you can pay something like $45 to get an online prescription to have a D test from a local blood lab.